Cancer Patients are set adrift when cancer treatment is over, there is no safety net, what if they fall?

Cancer Patients are set adrift when cancer treatment is over, there is no safety net, what if they fall?

‘Cancer Patients are set adrift when cancer treatment is over, there is no safety net, what if they fall?’

By Jennifer Young

cancer survivorship, surviving, cancer treatment, cancer patients, nhs, research into cancer, breast cancer, womb cancer, uterine cancer, ovarian cancer, vaginal cancer, female cancers

 

Again and again those who have been through cancer treatment tell me that they don’t know what to do next. From the moment they were diagnosed until the moment their cancer treatment ended they were on a clear and well- defined path. As soon as they got to the end of the path there was no more guidance. ‘What should I eat? Is dairy ok? What about soy? Will it come back? Can I run? Should I run? Why don’t I feel better? Shouldn’t I be happier than this? Why me?’  These questions remain unanswered. Worse, there is no one to ask.

I am not the only person having that kind of conversation. Dr Mary Iver, head of Psychology at All Hallows College Dublin has been having them too. Needless to say Dr Iver is much better at harnessing a useful outcome from those conversations than am I.

Dr Iver leads research into the issues surrounding survivorship and is passionate about the provision of information and support for those who are no longer cancer patients. She has found that ‘ex-patients’ want and need support but there is no central provision. All health service care stops with the cessation of cancer treatment. In order to fill the gaps, many small organisations provide support, along with some charities.

Dr Iver argues that whilst this is necessary, helpful, well-intentioned and well-received there is no standard, no way of objectively measuring the benefits or of formally measuring the outcomes in a statistically significant way. All of the groups are small (when compared to a National programme). In order to scientifically judge the success or otherwise of an initiative, larger groups with greater consistency are needed.

A 2007 study asked a large group of cancer patients how they would prioritise research. The cancer patients wanted research into living with cancer and the emotional impact of cancer to be top of the list rather than biological and cancer treatment research.

It is Dr Ivers experience, and that of the research team conducting the 2007 study, that these priorities are largely ignored and that research into survivorship issues and the study of survivorship is decreasing rather than increasing. Ironically, the number of survivors appears to be at it’s highest.

http://www.beautydespitecancer.co.uk/the-team

Lectures to health professionals on the psychological impact of survivorship used to be far more commonplace than it is currently-who looks after the survivors? Should it be left to the charities to help them to face the anxiety, depression and fear of recurrence that is common? Many University level Psycho-Oncology courses no longer run and there is huge competition for the little funding for research into survivorship that is available. There is little collaboration between competing academics.

With the NHS under constant pressure to reduce costs it seems unlikely that it will be the organisation to take the lead in providing centralised, standardised care to those for whom it has previously provided such successful cancer treatment.

It seems that it will be the charities and individual providers such as well-being coaches and counsellors that pick-up the pieces for those no longer going through treatment for cancer, the ex cancer patients.

You can learn more about Dr Mary Ivers work and cancer survivorship by visiting Cancer Survivorship Ireland.      

Tagged with: experience

Leave A Comment





Allowed tags: <b><i><br>Add a new comment:


Comments (3)

  1. joan moore:
    Feb 09, 2014 at 02:55 PM

    I would definitely agree with Dr Ivers, here in Ireland, to pick up the pieces you go to Cancer Support Service such as Arc House for counselling and therapies which do help cancer patients get back on their feet. There are some other support groups but the newer ones are not run efficiently and there is a lack of confidentiality. I have used both and would of course go back to Arc Cancer support House as this is run extremely on a professional basis with mostly trained volunteers. I have just completed another course of themo so what is there now for me, a sympathic, gp,and supporting practice. You are left to wonder what is next by your medical team and you feel afraid to ask.

  2. jyoung:
    Feb 09, 2014 at 05:21 PM

    There are certainly places around the UK where cancer patients can access great support networks and facilities but in rural and isolated communities it is very hard, and many cancer patients are left alone to try and put their life back together, especially if they are elderly or live alone. Just as the level of treatment varies around the country so sadly, does the level of aftercare. xx

  3. jyoung:
    Feb 09, 2014 at 05:23 PM

    Sorry, this post was from KM but I (Jennifer) messed up posting it - we really should find a competent editor!!

    There are certainly places around the UK where cancer patients can access great support networks and facilities but in rural and isolated communities it is very hard, and many cancer patients are left alone to try and put their life back together, especially if they are elderly or live alone. Just as the level of treatment varies around the country so sadly, does the level of aftercare. xx